I felt like such a heel not going with Trevy for his first post hemi EEG. Yeeeeeees...Jonathan went with him. Yeeeeeees...he's just as good as me. But still! He's my baby! I was instead sitting on floor 6 east waiting for Neurology to get their boots here and help me sort out this medicine mess! Seriously it's like a bad joke...how many Neurologists does it take to write a bloody script? And fax prior authorizations? Cause Trevy's been back for hours now. And I'm STILL waiting! Anyway... Jonathan had just stepped out to meet the pizza delivery guy when Dr. EEG made his rounds. Of course I asked immediately if he had read the EEG. Of course he had. That's why he was there afterall. And I cried when he told me... that for the first time in almost two years. For the first time since this whole crazy mess began. my baby's EEG is completely normal! Side Note: It's super fun to sob in front of Japanese men and watch them squirm When I kept repeati...
Our family's journey with catastrophic epilepsy, homeschooling, and unconditional love.
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Yesterday was Sophie's last day of summer school and I am going to *try* and embrace the lazy summer days that lie ahead.
Honestly, this is my trying to make lemonade out of summer break. The idea of full on Trevy just makes me want to weep. And then I feel guilty for even feeling that way. He's just SO much work. If I had a full time nanny/cook...it wouldn't be an issue. It's the not having the full time nanny/cook that has me shaking in my mommy-boots!
...danielle
He's gotten so tall, Danielle.
It's hard to find perspective and patience and energy isn't it?
This would be a lot of work initially...one very full day....have you ever heard of The Big Cook? It's a cookbook (Canadian) where you cook for a day and have meals for a month. Some girlfriends and I got together to do that ....it took us 12 hrs with no kids....and although we were exhausted, my goodness it was a lifesaver...only having to pull meals from the freezer in the morning. Maybe you have a 2 or 3 friends to do that with? Church? The dads? Something! ~ Can you hire a student for housekeeping over the summer? There should be funding for housekeeping I say!!
Hang in there, my friend.
Hugs,
M
Does Sophie ever walk stiff and funny like that?
A part of me wants to believe it's "normal" neuro kid stuff...
...danielle
It all comes down to those core muscles. Sophie has weak core muscles. And EVERYTHING stems from those muscles. So for him to hold that tiny little flower in between those fingers for a period of time...well...it can take a lot of you. And...yes...Sophie ALWAYS walks kindof stiff and funny.